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Manda

Hello

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Hi everyone.  I'm Amanda, 27, from WV.  I think you guys might be the answer to some prayers...  A little background:

I've suffered migraines from about puberty.  Only a few that left me in tears, but some real teeth grinders.

I gave birth to my daughter on 8/10/11.  During that process, I got a bad (wet tap) epidural.  The epidural needle entered my spinal column and caused a spinal fluid leak resulting in a spinal headache.  That was some killer pain.  Any time I stood up, it felt like something inside my head was going to explode.  It was like a bomb going off in there.  It lasted 6 days, then I just magically woke up pain-free.

When Emerson (my daughter) was about 3 months old, I started having more killer headaches.  The pain was worse than the spinal headache, but very localized.  Always right around my left eye.  Always the same side, the same place.  It felt like my eye was about to fly out of my head and unleash a maelstrom of destruction the likes of which the world had never seen.  It just felt like pure energy in there.  It was enough to make me scream at times.  Just absolutely crippling. 

Until today, I thought maybe it was a side effect of the bad epidural.  It didn't make sense, because it was so localized.  The spinal headache was everywhere, but this was in a smaller spot.  So then I wondered if I had a tumor or something.  That level of pain is NOT NORMAL.  Of course, I couldn't get to the ER or doctor during an attack.  They were over before I could get there.  In some reading, I learned about cluster headaches.  Suicide headache is right.  There have been numerous times that I've said the pain would stop if I could just blow a hole in the side of my head. 

I only recently got health insurance again, and I will be going to the doctor soon.  Some things make me wonder if these are truly CH though.  I can't predict them.  They come at a moment's notice, with little to no warning, and then are over as quickly as they came.  I'm left feeling tired and maybe a little bruised.  Kind of a dull all-over ache in my head.  During the attack, it feels like my eye is... wrong somehow.  I'm sorry.  I'm not sure how to explain it.  Maybe swollen?  Droopy?  Like the pupil isn't reacting correctly or quickly enough?  Also, there's no rhyme or reason to when they happen.  So many links say that they happen on a schedule almost.  The same time every day.  Mine don't.  They seem totally random.  Takes me by surprise, beats me to death, then leaves the way it came.

Anyway, I just wanted to say hi.  Any insight you could give would help.  Or tell me I'm crazy and it's not CH and I need to go away.  At this point, I just want answers.

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They sound like CH to me, with the exception of the unpredictability. Mine started out like clockwork but since I started busting they became unpredictable, so I don't think that rules out the diagnosis. Definitely get in to see a neuro ASAP and try to get some O2.

You are in the right place though, and you will find all kinds of support here. I suspect in a few minutes CH Father will chime in with all the info you could possibly want.

Please let us know if there is anything that we can do to help!

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Hi Manda,

You're certainly not crazy. Or we all are maybe  :P

Sounds like CH, but I'd say a firm diagnostic from a headache specialist would be needed first. Not easy to get, though, but needed. There are many types of headaches. Then uhhh better wait for advice from more experienced players...

I never thought my headaches were that clocked scheduled, nor the cycles (they come in cycles). They come at night, that's a common symptom, wake me up after 60-90 minutes sleep.

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I suspect in a few minutes CH Father will chime in with all the info you could possibly want. 

Let's hope so! CHfather has a way of laying everything out for CH'ers that's tuff to beat!

Meantime I'd like to emphasize the importance of going to a headache specialist for the diagnosis. Garden variety neuros generally don't know jack about CH and more often than not will do you wrong.  :(

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Hi Manda,

There's no way for you to be certain what's wrong with your head until an expert in these things tells you. Headaches are serious. You could have a tumor. You could have a blood vessel in your brain that's clogging up. It's important that you see a specialist as soon as possible and get an accurate diagnosis. In the meantime, make an appointment with whoever your primary doctor is as soon as you can. Tell the receptionist that you think you may have a brain tumor; it might get you in sooner. Tell the doctor your story and ask for a referral to a neurologist. If the neurologist is unsuccessful in quickly managing your headaches, ask him for a referral to a headache specialist. It's important that you get started on this tomorrow. Don't wait.

If it turns out that you do have cluster headaches, return here before submitting to anything even remotely invasive or even filling a prescription. We may be able to help.

Ron

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Im very new to this myself as well even though ive had "sinus infections" for years. You may not realise there is a pattern but thats doesnt necessarily mean that there isnt one, try starting a headache diary, even if there isnt a pattern it might be of help to you in learning in how to avoid future attacks it might also be of assistance to the neuro. I have always found difficulty expressing how painful this thing is and thats one thing a diary has let me do. Getting diagnosed properly is a must though.

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Hi Amanda,

You definitely found the right place.  Ron is 110% right.  There are alot of remedies and great advice on this site but proper diagnosis is crucial to your recovery.  Welcome, and painfree wishes to you! 

Brad

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Manda, welcome. So sorry for that pain.  I wish I could give you some kind of nice menu of options to try, but I have to agree with the others here that while 90-plus percent of your symptoms sound like classic CH, the rest, plus your headache history, make a solid argument for seeing a headache specialist as quickly as you can. 

(Also, if you are breast-feeding Emerson, of course you have to be careful about what you take in that might affect her.)

There is a headache center at WVU, if that is at all convenient for you:  http://wvuhealthcare.com/wvuh/Healthcare-Services/Neurology/Headache

Also, you can find a list at the website of OUCH (Organization for Understanding Cluster Headaches) of doctors recommended by people with CH (who I assume would be generally good headache diagnosticians).  There aren't any in West Virginia, but there are some in neighboring states that might be nearby to you (Pennsylvania, Ohio, Virginia, Kentucky)

http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%2001-27-2012.pdf

And maybe the state medical association could give you some guidance about other headache centers: http://www.wvsma.com/

You've seen how many people here will reach out to help you quickly.  If you get a CH diagnosis, they'll guide you through steps that will help you enormously, and probably quite quickly.  When you get an appointment, let us know and we can talk about what to do/ask if CH is the diagnosis.

Blessings to you and Emerson.

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Thanks so much for all the input and support, everyone.  I really appreciate it. 

I didn't get to make an appointment today, as I was visiting with my mom all day.  All the doctors in my town are requiring applications due to the current trend of doctor shopping for narcotics.  Not a problem for me, as I believe the last time I had a prescription for narcotics was in 2008 when I had my appendix removed.  I even refused them after Em was born.

I'm not breast feeding, so that's not a big issue.  Please note that what I say next is not meant in a judgmental way AT ALL.  I'm not hip on using some of the less-than-legal busting methods personally, just because I'm a ridiculously straight arrow and totally paranoid about anything like that.  If some kind of prescription or O2 might help, I'm all for it.  I just can't do the other busting methods.  Maybe I'm just a wiener.  :-(  That being said, please understand that I don't judge any of you for using whatever methods you use for your pain and prevention.  I'm the live and let live type and I say as long as nobody's getting hurt, roll with it.  I really hope that doesn't make me less welcome here.

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I really hope that doesn't make me less welcome here

Absolutely not, and I'm sure you will get full support from everyone here whatever way you chose to try to reach pain free days (PFD). But for your information, there is also, http://www.clusterheadaches.com/ where more conventional ways of fighting the beast are discussed

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Hon, First and foremost, you gotta get a firm diagnosis.

I've had TONS of post-lumbar puncture headaches, and they're horrible... But this could be all sorts of other problems too. It could be something that could kill you if they don't check it out properly. They could have seriously set something out of whack with making your spinal fluid too low. There are other headaches similar to clusters that are like you describe.

Try taking a picture of your eye during the attack if you can.

Second... Start keeping a headache diary! It might look to you at first like there's no rhyme or reason, but you don't know that. I'm chronic, and my hits aren't on a timetable. I tried keeping a diary of it to figure it out, but couldn't really, That doesn't mean that you won't figure something out.

Plus 90% of Neurologists / Headache Specialists want you to have a headache diary.

Third: I know you're uncomfortable with the idea of taking something illegal. Trust me, I was too! But there are several methods here on the board that are 100% legal that people are using to help their CH. If you have it, keep us in mind.

You're welcome here no matter what you choose... That's the important thing, it's YOUR choice, and only yours.

Hope you get relief soon hon! *hugs*

Mystina

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Of course you're completely welcome here, Manda.  Many, many people here had views very similar to yours about busting, until their meds stopped working or the side effects of the meds became intolerable.  Hopefully, that won't happen with you.  There's a lot of hope on the horizon for effective CH treatments that will circumvent the meds currently prescribed.  (You might want to sign up here to be informed about clinical trials if/when they occur for a very promising anti-CH medication, BOL-148, being developed by a pharmaceutical company: http://www.entheogencorp.com/community/

BOL-148, incidentally, is made from very high doses of LSD that are rendered non-hallucinogenic by the addition of another compound.

If you have CH, oxygen is indeed the best side-effect-free abortive for an attack.  Yet for some reason, 50% of people with CH don't get an oxygen prescription.  So it's good to go into an appointment prepared to insist on it.  Here's some info: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

(It sounds from what you said that your attacks are maybe quite brief in duration, which would be a consideration for any abortive, since they all take some time to work.  But a competent doctor will take all that into account.)

Just thinking ahead . . .  if you have CH you'll probably get prescribed verapamil, or prednisone, or neurontin . . . or something.  They all have side effects.  Sometimes, even often, they work, at least in the beginning.  As Purple says, if you haven't already checked out www.clusterheadaches.com, that's where you'll find larger discussions of those conventional meds, although people here also know a lot about them.

Still thinking ahead . . . Since your daughter is not sharing her nutrition with you, you might want to consider something like the anti-inflammatory vitamin D3 regimen that has helped a lot of people, or the licorice root regimen that has also created good results. You are clearly smart and cautious enough to read this information carefully before deciding whether to try it or not, particularly being cautious until you know what your condition is.

D3 info: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

Many people with CH find that quickly drinking a RedBull or other energy drink (high in caffeine and taurine) at the first sign of an attack can substantially reduce the attack's severity and duration.  Again -- whether this would work for you, or be advisable for you, only you can decide.  Maybe be prepared to discuss these options with your doctor (who in all likelihood will scoff at anything that's not in his or her book, but who knows . . .).  There are other things, too -- melatonin and kudzu root and GABA, for example -- all of which people here know about and will be happy to discuss with you. 

Best wishes -- Keep us informed.

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Hi

Wecome here to us :)

What the others say, get diagnosed. But i would like to tell you a thing. I got CH right after giving birth to my now 8 years old daugthter. I read somewhere it is a factor for CH to break through, just sayin.

Hope you get diagnosed fast and please... don`t leave us, let us follow you.

My best wishes

Tingeling

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They may be starting to cluster.  I hadn't had any of these (migraines, but no suicide headaches) since mid-December or so.  I had one Sunday that started at 1:45.  Another today about the same time.  It's starting to ease a bit now, as long as I stay still.  Of course, I'm home alone with Emerson today and she's hungry now.  I've noticed that bending over makes it "surge" if that makes sense.  Throwing back caffeine like there's no tomorrow, but it doesn't seem to budge it.  I think it takes too long.

I finally was able to schedule a doctor appointment.  I go Friday at 2:45 to my GP.  Hoping for a neuro consult.  Maybe a CAT scan too.

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The doctor prescribed Topamax, 25mg, one a day for 7 days, then twice a day. 

Also scheduling a CT scan of my noggin to see if there's anything living in there.

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